Madalena Liougas and Alisa Grigorovich highlight that, when it comes to the use of tracking technologies in dementia care, surveillance isn’t safety, and safety shouldn’t mean surrendering dignity.

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Technological innovation in long-term care is often framed as an opportunity to improve quality of care for residents, including by enhancing their safety, improving staff efficiency, and support of person-centred care. In recent years, real-time location systems (RTLS) have been promised to deliver exactly this. These systems involve wearables (a tag, badge, or bracelet—placed on residents, staff, or equipment) that communicate with sensors throughout the care home and are used to track precise locations in real time. Yet despite the potential benefits of these technologies, their use raises significant concerns when caring for people with dementia. Without proper consideration, use of RTLS can reduce residents to data points, position families as default decision-makers, and burden frontline staff with enforcing their use.

Based on findings from our larger research project, consider this composite case example: Robert Jenkins is an 83-year-old long-term care resident living with moderate dementia. He walks frequently, sometimes leaving his floor to go to other floors, making it difficult for staff to find him for medications or activities. His care home installs RTLS to help staff locate residents like him and to also better measure engagement in activities by tracking time spent in areas such as the garden or dining room. The home also hopes that the data collected will be used to develop clinical algorithms that could predict falls or health decline. Because Robert cannot provide informed consent, his substitute decision-maker, his daughter, is approached for consent and does so enthusiastically, believing it will keep him safer. A nurse fastens the wearable to Robert’s wrist. At first, Robert seems to like his wearable, which looks to him like a watch. After a few days, he starts tugging it down his hand, sliding it off, and looking visibly upset when the staff put it back on. Eventually, he refuses outright: turning away, shaking his head no, clasping his hands, flushing red, breathing rapidly. Staff are left unsure as to what to do, but feel that because Robert’s daughter consented, and because the care home framed this as being important for safety, they should make him wear it and improvise by putting the wearable on his ankle where he is less likely to notice it.

Image Description: An AI generated image of a smartphone map with location pins is shown in the foreground, with a hospital building in the background, symbolizing navigation to healthcare services.

This is where the ethical tensions lie, and it is not simply a matter of autonomy versus safety. Furthermore, in Canada, this tension is not only ethical but also legal. Under Ontario’s Health Care Consent Act, substitute decision-makers are required to make decisions in the best interests of the person (here, Mr. Jenkins, who is living with dementia) while also taking into account their prior and current wishes, values, and beliefs. In practice, however, the boundaries of the substitute decision-maker role are often poorly understood. Long-term care homes utilize the Health Care Consent Act to frequently prioritize substitute decision-makers’ preferences without adequately considering whether those decisions truly reflect the resident’s preferences.

Most long-term care homes approach consent to technology in a similar fashion as they do to making decisions about medical treatments – as a one-time decision that is made by substitute decision makers (often a family member or friend). However, consenting to use of RTLS is a qualitatively different task as this isn’t a one-time intervention and its immediate benefits might remain uncertain. In Robert’s case, his daughter’s consent was treated as permanent authorization, while his day-to-day reactions, clear signs of distress and dissent, were dismissed as a compliance issue to manage rather than an opportunity to revisit this decision with the daughter and Mr. Jenkins. If we take autonomy seriously in dementia care, this means that we cannot solely rely on whether a person is capable of understanding and verbally communicating their preferences to others. Autonomy is also expressed through embodied self-expressions that communicate comfort, refusal, and more, especially when words are harder to find. When a resident repeatedly signals discomfort or refusal, continuing to ask them to use a wearable isn’t simply paternalism justified by worries about safety; it risks becoming a form of coercion that privileges institutional policy over human dignity.

This is where feminist bioethics offers crucial insight. It pushes us to look past the narrative of utilitarian accounts of benefits and risks and ask: Who bears the burden? Who holds power? Who is made vulnerable when a technology like RTLS is introduced into care? In our research, we found that care staff receive minimal training, which left them uncertain about how the RTLS system worked, when they should use it, and how best to explain its purpose to residents and families. They were also unclear about how to respond to residents when they dissented, as Robert does in the above example. The ethical decision making thus shifted downward. Family caregivers are often very supportive of technological monitoring because of their worries around safety of their family members, and care home organizations value RTLS for its potential to provide operational data. This leaves direct care staff, already stretched, as the ones who have to enforce surveillance on residents like Robert while also soothing the very distress these technologies can create.

For RTLS to be used ethically and responsibly, it must be treated as an ongoing intervention. The decision on whether to use RTLS or not should be one that is revisited considering residents’ ongoing expressions of assent or dissent, and the legal obligations of substitute decision-makers to actively center the person’s wishes, values, and best interests. Robert’s situation illustrates common everyday ethical dilemmas for residents and staff when this doesn’t happen. This requires several critical shifts in practice. First, we need to move from one-time proxy consent to ongoing assent by building procedures for checking comfort, recognizing dissent, and revisiting decisions over time, especially when residents’ distress is persistent. In Robert’s case, his repeated refusal should have triggered a reassessment of whether use of RTLS was appropriate and identification of alternative options to surveillance, not a workaround to hide the wearable from view. Second, we need to provide more training for staff, not just on how the technology works, but on how to explain its function and value to residents, how to respond to refusal, and how to avoid turning safety rhetoric into coercion. Robert’s staff needed guidance on how to navigate the conflict between his daughter’s consent and his visible distress. Fourth, evaluate iteratively, if the benefits remain hypothetical while the burdens are immediate, pause and reassess before normalizing digital surveillance as care.

Ultimately, for RTLS to enhance quality of care, we need to stop treating residents’ resistance as noise in the data. In dementia care, dignity is not a feature you add later; it is the foundation.

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Madalena Liougas is a PhD Candidate at the Rehabilitation Science Institute, Temerty Faculty of Medicine, University of Toronto

Alisa Grigorovich is an Associate Professor at the Department of Recreation and Leisure Studies, Brock University